Video of CDC Press Conference on CFS Now Working!!!

Here's a copy of the email I received from the CAA's webmaster late last night (11/6):

"I am so sorry that you were not able to access the video of the press conference. I have been in touch with our hosting company and it seems the problem was that so many people tried to access the video at one time that it was sending out error messages. They have made some adjustments and feel the problem has been corrected. I have also had some people who like yourself, could not view the video, try again to access the video and they were able to view it now."

"At your earliest convenience please try to access the video again and let me know if you are able to view it now."

Maybe the trick is to try to access it at various times of the day. If you still have problems, email Kim Almond, the CFIDS Association's webmaster, at webmaster@cfids.org.

A six-minute video file of the press conference announcing the CFS public awareness campaign is now available online. To access the video, go to http://www.cfids.org/sparkcfs/press-conference.asp.

I've also posted the link to the full transcript on a separate thread. I strongly recommend reading it, even if you have to print it out and read it later.

Here's the summary:

The press event was held Friday morning at the National Press Club in Washington, DC. Dozens of reporters from national and local media outlets across the United States were in attendance, and many others participated via phone link. It was incredibly exciting to see CFS in the national spotlight in the first-ever national education campaign for the illness.

Kimberly McCleary, president and CEO of the CFIDS Association of America, moderated the press conference. She began the press conference, saying, "This event is a real milestone in the life of every chronic fatigue syndrome patient, and it marks what we hope will be a turning point in the public's recognition of the severity and complexity of CFS, and in the ability of health care professionals to diagnose it and care for people who suffer from it."

Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention (CDC), called the campaign "a watershed moment for the millions of Americans who live with chronic fatigue syndrome, or CFS."

She continued, "For too long, CFS has been shrouded in mystery, controversy and misinformation. Today, we talk about the first national public awareness campaign in the history of the illness."

Dr. John Agwunobi, Assistant Secretary for Health, discussed the renewal of the Department of Health and Human Services charter for the Chronic Fatigue Syndrome Advisory Committee and announced seven new NIH grants for CFS research. "These awards will support a wide range of studies into a variety of biologic mechanisms important to CFS. From basic pathophysiology, to the role of certain triggering and perpetuating factors, to biomarkers of disease and disease severity, to improved treatment of the condition, these investigators seek to explore and document progress in understanding CFS, enhancing our ability to diagnose and manage it."

Dr. William Reeves, chief of the CFS research program at CDC, discussed the scope of CDC's research on CFS and the findings that indicate why this illness is a public health concern for the Centers for Disease Control and Prevention. He noted that studies "found that CFS follows a pattern of remitting and relaxing symptoms and that complete recovery is rare. We also learned that patients who get appropriate care early in their illness have better long-term health outcomes, again underscoring the need to improve health care professionals' abilities to diagnose and manage the illness."

Dr. Anthony Komaroff, a CFS physician and researcher at Harvard Medical School, told reporters that while we still don't understand the cause or causes of the illness, "the good news is that literature from over 4,000 published research studies has revealed a number of physical or biological abnormalities in CFS. The illness is not simply a set of symptoms people imagine they have, and it is not a psychological illness. In my view, that debate—which has raged for the past two decades in the United States and abroad—should finally be over."

Dr. Nancy Klimas, a CFS physician and researcher at the University of Miami, remarked, "Historically, the lack of credibility afforded this illness has been a key obstacle to understanding it. Today, with solid evidence that CFS has identifiable biologic underpinnings, and with evidence that people with CFS experience a level of disability equal to that of patients with multiple sclerosis, advanced HIV disease and undergoing chemotherapy, I hope we can begin to put an end to the stigma surrounding this illness." Dr. Klimas also focused on treatments, saying, "Although there's no single treatment—no hoped for 'magic bullet'—that fixes the illness at its core, there are treatments that can improve symptoms, increase function and allow CFS patients to engage in activities of daily living. Current best practices for clinical care include a combination of symptom management, activity management and exercise therapies."

Adrianne Ryan provided the final perspective on the illness—a patient's story—a fitting reminder to the media and government officials listening to the press conference that there are more than one million Americans suffering from CFS, each with an equally compelling story of the toll CFS has taken on their lives. She described her six-year nightmare of having both her body and her mind fail her, saying, "When I tried to resume even moderate activities, I would collapse, often for weeks at a time. Sometimes even taking a shower would be too much. Over and over the cycle would be repeated. I would attempt to return to normalcy only to relapse into pain, fatigue and a life lived in isolation."

We'll have more coverage of the press conference in CFIDSLink on November 8 and in the fall issue of the CFIDS Chronicle. In addition, CFS is featured on the CDC's home page at http://www.cdc.gov/.

Look for these stories about CFS!

Stories about chronic fatigue syndrome and the campaign have already started appearing, and more will follow in the days and weeks to come.

We hope many of you saw the report about CFS on NBC Nightly News last night, which included comments from Dr. Julie Gerberding and CFS patient Jennie Spotila. You can see the video segment online at http://www.msnbc.msn.com/id/15535705.

The November 13 issue of People magazine, on newsstands NOW, features the full-page ad about CFS. People magazine also sent a reporter to the press conference and is considering doing a story.

In addition to the media coverage reported in the CFIDSLink on Tuesday, also look for stories here:

NBC News – NBC stations across the country will be airing a 2-minute story on CFS on November 3 or the following week. Many affiliates will air it on their 5:00 p.m. news.
CBS's The Early Show, Monday, November 6 (tentative)
Associated Press. AP newswire stories will appear in media outlets across the country.
United Press International. UPI newswire stories will appear in media outlets across the country.
CNN
US News & World Report
Glamour magazine
Society for Women's Health Research (subscription newsletter)
International Medical News Group publications (Family Practice News, Internal Medicine News, Pediatric News, etc.)
WebMD

For information on other media coverage already announced, visit http://www.cfids.org/sparkcfs/media-coverage.asp

It's really worth looking at the video. A lot of what was missing in the NBC Nightly piece is on it -- how debilitating CFS really is, all the research that shows biological abnormalties, you name it. And it's so good to see Drs. Kormaroff and Klimas out there! Yay!

...you might want to try again later, or tomorrow. I wanted to watch it again, and couldn't get it to play, either. Maybe we're having problems because so many people are trying to access it at the same time?

Mezombie, thanks for posting this for those who are not on CFIDS Association of America email list. I received it and cried as I watched the video. I was especially touched by the woman in the commercial. It was so realistic as she slowly and gradually sat up in bed and the close-up of her face revealed dark circles under her eyes....but most especially when she said "I miss my life" as everyone runs out of the house to play and get on with their lives and leave her alone.

I felt that sooooo deeply that I forwarded the email to almost everyone in my address book.

My windows media player gives an error message to. Extension does not work, try http etc, etc. I see that I am n ot the only one. I even re-downloaded windows media player- to no avail. If anyone know how to fix this error, please post!

CDC's www site
Did anyone else notice that on one page it says there are 1
thats one million American PWC's
but on the page with the movies it states 4 - four million
Whats up with that. Still gratefull for exposure.